Hello all....I'm glad a I found this sight.

Background Info:
Ok, so the headaches started about 8 years ago when I moved back to Chicago from Philadelphia.  Dr. said it was from the stress of moving and the new job etc.

After a few Spring and Fall episodes I went to see another DR. and he sent me to the Allergist that said it was Mold that I was allergic to and causing the heaches in the spring and fall...oh and when I have a beer or 2 during that time.  I have been struggling with these damn things for years always around the same time.  I have now been getting headaches 1-4 times a night for 8 days straight and i can't take it anymore.  All the symptoms I read are what I get.  restlessness, right eye is killing me, holding onto my temple, runny nose, tearing, you name it.  I wake up pretty much every night at 2AM and am outside walking back and forth on the sidewalk smoking cigarettes till it goes away.  My treatment has been slamming (3) Alleve which usually helps after 20-45 minutes.  I know this can't be good for me, so I hoping some of you experienced folks can tell me what i should make sure the DR. prescribes for me.  They seem to only come in the spring and fall.  So far I am on 8 days straight and it's brutal.

Anything you guys can share with me on how to treat them or what drugs to get, etc. etc. would really help me out.

Thanks for taking the time to offer some advice.

Mike

Hi Mike, read the o2 link on the left.

It works well for many of us.

Read all info that is available on the site, then ask all the questions you want.

All the best :)   

OK, you need to get a few things ASAP.

1st, go see a doctor and try to find a Nuerologist/Headache specialist.

2nd Get a script for O2 and make sure you get what you need.  NON-rebreather mask... AT LEAST 15 lpm regulator.

3rd  Until you get that, try energy drinks with taurine to abort headaches... you may not sleep but the lack of pain might shoudl be worth it

Stay here, ask questions, and READ READ READ... lots of things to try and not everything works for everyone.

Man you do sound pretty "clustery". Dang.

Effective treatments for CH do abound fortunately.

If I were you I'd probably first get onto hi LPM non re-breather mask O2 for aborting attacks immediately. Proven very effective. Bonehead doctors don't know jack about it of course, but you'll find details here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

For a preventative, I'd check into the sub hallucinogenic doses of some otherwise hallucinogenic substances shown to snuff a headache cycle out. That's gotta sound really left field, but it's actually not IMO and is gaining some serious attention from prominent researchers. You could search this board and the old message board for "RC seeds" for a starter. And there's clusterbusters.com.

I've seen some encouraging reports here just lately regarding other non drug approaches for preventatives, such as using Taurine, Kudzu and melatonin.

There are lots of more conventional, more toxic, more side effect prone preventative meds such as Verapamil that people have success with, and that neurologists routinely prescribe. I'm on a less common one - Neurontin. You really want to seek out a headache specialist neurologist for this.

Then there are imitrex injections, for many of us a guaranteed silver bullet way to abort an attack and a critical component in the arsenal. They are expensive, and you don't want to rely on just them. More like a back up in case your preventative and the O2 doesn't work.

LOTS of other stuff to combat CH with, which you'll find on this site - ya came to the right place.  8-)

FramCire wrote on Oct 2^nd, 2009 at 8:13pm:

Get a script for O2 and make sure you get what you need.  NON-rebreather mask... AT LEAST 15 lpm regulator.

You probably didn't mean get a prescription for non-rebreather, 15 LPM, right?

That would be nice of course, but not ordinarily realistic - the most likely scenario IMO is that you get a standard prescription for 8-10 LPM O2, then just go your merry way and assemble your gear for O2 that actually works for CH.

Or you can avoid a whole bunch of anguish, frustration and suffering by getting welding oxygen tomorrow morning.

Spend some serious time reading this site. There is more info here on the subject of CH's than you can begin to imagine.

Invest in yourself.

Marc

Good point Marc!  :)

  First, start to learn some basics about CH.
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Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
========
Don't seen any neurologist. Too many of them lack training and experience in dealing with complex headache disorders.

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
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Explore the buttons, left, starting with OUCH and the many internal links there.

And then keep us informed about your progress, questions, etc.

Best wishes....

Can't add much to what has already been said.
Welcome to a place with other people that share your horrible condition...a place where everyone is here to support you, inform you, teach you, help you. Stick around and learn from these wonderful people. Stick around long enough and before you know it, you'll be answering questions for the next newcomer, telling them what works for you. Hope you find it soon!

What works for me? I'm the Kudzu, Taurine, Melatonin guy bejeeber was talking about. (many others use this approach too. I learned it here.). It's a very effective method for me with nearly no side effects. It's affordable with no prescriptions needed. So no hassles with going through doctors trying to find one that knows enough about CH to help. PM me if you want more info.

Welcome! Sorry for your pain!

Hi Wiz!  What part of Chicago?  I'm from Aurora.  Drop me a PM or E-mail and I'll give you my Phone number.  Maybe we can get together for coffee or something and talk.  I'm no expert, but have been fighting these for 32 yrs, so I've tried a few things.

Grab a couple of Red Bulls, Monsters, or 5Hr Energy's (my preference) for a quick abort until you can get set up properly on O2.  Slam one down as fast as you can drink it at the very first sign of a hit.  If I get it soon enough I can knock one out in 5-8 mins.  If I don't get it right away it will at least knock it down to a bearable level.

Read the O2 info on the left until you understand it fully.  Go to your Dr and insist (demand if you have to) at least 15 lpm and a non-rebreather mask.  Try to get a script for 25 lpm if you can.  It makes a big difference to me to have the higher flow rate.  My Dr knows I have researched CH much more than she has so she will usually give me what I ask for, so I didn't have any problem.  I would also recommend the O2ptimask (available through the CH.com store).  This is not just a sales pitch.  I don't make a nickel from it, but they were developed for us clusterheads by Linde, and really work a lot better than the old non-rebreathers.  (I have several of the old kind you could have if you want to give it a try.)

Throw away the Aleve, or save it for a back ache.  It will do nothing for CH.  The reason you were experiencing relief when you did was that was when your attack was ending.  Aleve cannot touch the pain of CH.  All it will do at the level you are using is eat your stomach and liver and kidneys.  Been there, done that.

Glad you found us.  Hope we have helped.  You have just found your new home. :D

Jerry

All I can say is "WELCOME HOME" ;)

Chris

Welcome Wiz and I'm sorry to hear you're having such a rough time with CH and Doctors.  The doctors alone can be enough to cause a headache  :D

As you've heard before seek out a Neurologist or headache specialist asap.

Start A HEADACHE LOG!!  If you bring in something in black and white to a Dr to read this will help, sometimes they just don't get it until you take the time to log all your hits, times and intensity.

In the mean time, there is an herb you can get that may help lower the intensity and the frequency, (it works for me but may not work for everyone).  Kudzu is the name of the herb, you can order it off line or see if a local GNC carries it.  I order mine off line since it's a heck of a lot cheaper that way!

Also as previously stated get some O2 if you can.

Please let us know how it goes and keep in touch.

Wiz,

Welcome to Clusterville. Call Jerry and get with him. He's got a lot of info to offer you and meeting another CHer is a great experience. I'll vouch for the fact that he's not an axe murderer, so you'll be safe in a public place with him. Knowing we're not "alone" is sometimes one of the best treatments we get around here.

I'm with the O2 crowd. I swear by it and recommend it highly. A high flow rate with the NON-rebreather mask (or the Opt2tic (that can be ordered from the CH.com store on the left) are a must to get the RIGHT RX for the O2.

Red Bull (or other energy drink) is a great "help" (to me at least) when I can't get to the O2 in a hurry. Taken at the first sign of a hit, I can sometimes kill the beast in its tracks.

Melatonin before bed (I take 12-15mg) helps get thru the night hits (I very seldom have a night hit and have been taking it for several years - I swear by it).

Read read read. There's a heck of a lot of info on this site (more than in most medical schools) on CH. Find a doc who'll work with you (and this could take some doing - you may have to go thru a couple before you find the "right" one).

Ask questions - someone will be along to answer them. And again Welcome..

Hugs BD :-*

bejeeber wrote on Oct 2^nd, 2009 at 8:43pm:

FramCire wrote on Oct 2nd, 2009 at 8:13pm: Get a script for O2 and make sure you get what you need.  NON-rebreather mask... AT LEAST 15 lpm regulator. You probably didn't mean get a prescription for non-rebreather, 15 LPM, right? That would be nice of course, but not ordinarily realistic - the most likely scenario IMO is that you get a standard prescription for 8-10 LPM O2, then just go your merry way and assemble your gear for O2 that actually works for CH.

Yes, I meant get a script that calls out specifically a non-rebreather mask and regulator of at least 15 lpm.  Your script needs not be that specific and any decent resp therapist can look up the info and get you what you need.

HOWEVER, if a doctor is learning about CH you need to educate him/her and make sure you do the same with anyone who is treating you.

Mike,

How are you doing?  Please keep us updated.  You have joined a family.  Perhaps a rather strange family, but a family none the less, and we all hurt when another member hurts.  Please let us help.

Jerry

Hi Wiz..I'm pretty new to the site as well, but it's full of wonderful people and advice.  I, like you, would have these damned headaches come on and I was swallowing advil like they were tic tacs. Now I'm trying the kudzu route and was headache free for 2 nights and altho one tried to break thru the barrier last night, it didn't fully succeed.  So I take this as a good sign on the kudzu.  I'm going to get the melatonin as well.  Not sure if the energy drinks would work for me..I did gulp down a Starbucks double shot which didn't do squat.  But hey... whatever works.  My Neuro is ordering me the oxygen and wants me to have accupuncture, altho several people on this site have told me not to waste the money...it doesn't help (the accupuncture, that is)  Also, and this message is for anyone on Imitrex...this is something I found on Wikipedia...don't know how many of you it will effect.
  The patent on Imitrex tablets expires in the USA in 2009, and the generic sumatriptan tablets should be available shortly thereafter.
Anyway, welcome to a really great support group.  I've been dealing with these headaches for over a year every night (chronic, not episodic) and this forum is the best thing that's happened to me during this time.  It's unfortunate that any of us have the need to be here, but Thank God this place exists.  Alot of compassion and knowledge.  Best of luck to you Wiz.

grace wrote on Oct 8^th, 2009 at 9:42pm:

Hi Wiz..I'm pretty new to the site as well, but it's full of wonderful people and advice.  I, like you, would have these damned headaches come on and I was swallowing advil like they were tic tacs. Now I'm trying the kudzu route and was headache free for 2 nights and altho one tried to break thru the barrier last night, it didn't fully succeed.  So I take this as a good sign on the kudzu.  I'm going to get the melatonin as well.  Not sure if the energy drinks would work for me..I did gulp down a Starbucks double shot which didn't do squat.  But hey... whatever works.  My Neuro is ordering me the oxygen and wants me to have accupuncture, altho several people on this site have told me not to waste the money...it doesn't help (the accupuncture, that is)  Also, and this message is for anyone on Imitrex...this is something I found on Wikipedia...don't know how many of you it will effect.   The patent on Imitrex tablets expires in the USA in 2009, and the generic sumatriptan tablets should be available shortly thereafter. Anyway, welcome to a really great support group.  I've been dealing with these headaches for over a year every night (chronic, not episodic) and this forum is the best thing that's happened to me during this time.  It's unfortunate that any of us have the need to be here, but Thank God this place exists.  Alot of compassion and knowledge.  Best of luck to you Wiz.

1.  Does the Starbucks double shot have TAURINE in it??  I know the tall starbucks cans do, they are what I use.  I dont think they are the double shot.

2.  Does this mean imitrex INJECTS will be generic too??

Hi and welcome.  You are no longer alone with this condition.

THIS stands out to me like a red flag:


Quote:

Dr. said it was from the stress of moving and the new job etc. After a few Spring and Fall episodes I went to see another DR. and he sent me to the Allergist that said it was Mold that I was allergic to and causing the heaches

Please tell us that you have since...found a more knowledgable Dr.
Mold doesn't cause Clusters.  Moving from one city/state  to another does not cause Clusters.

Please read the info Bob Johnson gave you.  Read all the links to the left.  Educate yourself.  Knowledge is power.  It will allow you to save yourself hours, days, or as many people here....YEARS of mis-diagnosis and grief. Not to mention pain that could be allieviated so much sooner.

I'd love to have a exact figure of how many people i know here that went decades w/o a correct diagnosis.  How many had all their (perfectly healthy) teeth pulled because they were told it was their teeth that were the problem.  How many had sinus surgery..I could go on, but I think you get where I'm coming from.

I've been chronic for 22 years now.  Oxygen is my savior. 

Linda

What Linda said! :o This is a doc who isn't familiar with CH. If he is open to new info, print out the stuff Bob gave you....that info is golden....and start educating him. If he is not open to new info, move on. This is not a condition where you can rely completely on doctors. You must educate yourself and take an active role in your treatment. Sitting in front of a doc and saying fix me is a recipe for many many long and painful attacks.

Welcome home brudder!

Joe